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Exploring the life experiences of school-aged children afflicted by tethered spinal cord syndrome: An interpretative
Nan Lin1, Mingxian Ren1, Yujun Xiang1
1Nursing Department, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, Zhejiang, China.
Insights
Children with tethered cord syndrome (TCS) face emotional and social challenges often overlooked by healthcare providers. This study highlights their need for independence and understanding during reintegration into daily life.
Area of Science:
- Pediatric Health
- Qualitative Research
- Child Psychology
Background:
- Children with tethered cord syndrome (TCS) experience significant educational, familial, and social challenges.
- Healthcare professionals often focus on physical recovery, neglecting the emotional well-being of children with TCS post-discharge.
- A holistic understanding of children's subjective experiences is crucial for effective support.
Purpose of the Study:
- To explore the subjective experiences and perceptions of children with TCS.
- To understand their reintegration into family, school, and society after hospitalization.
- To inform interventions promoting self-expression and positive life experiences.
Main Methods:
- Qualitative interpretative approach utilizing semi-structured interviews.
- Study conducted with twelve children aged 8-15 diagnosed with TCS.
- Data analyzed using reflexive thematic analysis to identify key themes.
Main Results:
- Four major themes emerged: "growing pains," "inappropriate familial affection," "social estrangement," and "striving for independence."
- Subthemes included "a shameful secret," "distance between ideal and reality," "knowing is not understanding," "unspeakable guilt," "uncomfortable distinctions," and "familiar stranger."
- Children with TCS exhibit internal sensitivity and face challenges in self-development, family, and social interactions.
Conclusions:
- Children with TCS desire independence and freedom comparable to their peers.
- Findings enhance understanding for healthcare professionals, families, and educators.
- Results provide a foundation for interventions supporting self-expression and meaningful life experiences.
Background:
Children affected by tethered cord syndrome (TCS) encounter multifaceted challenges encompassing educational, familial and social spheres, underscoring the significance of a holistic comprehension of their subjective emotional well-being and life encounters. Nonetheless, healthcare professionals tend to prioritise the physical functionality of the afflicted individuals throughout the treatment and rehabilitation process, often neglecting the emotional experiences and requirements of these children as they transition into posthospitalization phases.
Aim:
To advance the subjective experiences and perceptions of children with TCS upon reintegration into their families, educational institutions and wider societal contexts subsequent to their discharge from medical facilities.
Methods:
The study was conducted at the Children's Hospital in Zhejiang. Twelve children aged 8-15 with TCS were included in the study. The research design used an interpretative qualitative approach, utilising semi-structured interviews as the primary data collection method. Data analysis was performed using reflexive thematic analysis, facilitating a comprehensive exploration of emerging themes and patterns.
Results:
Four major themes (and seven subthemes) were identified from the findings: (1) growing pains (a shameful secret, distance between ideal and reality); (2) inappropriate expressions of familial affection (knowing is not understanding, unspeakable guilt); (3) social estrangement (uncomfortable distinctions, familiar stranger) and (4) striving for independence and consistency.
Conclusions:
Children affected by TCS exhibit internal sensitivity and challenges in self-development, family dynamics and social interactions. They aspire to attain a future characterised by independence and freedom, akin to that of their typically developing peers. These findings can help health professionals, families and educators gain a deeper understanding of what it takes to be a child with TCS, and the findings can also serve as a platform for interventions that seek to promote self-expression in these children so that they can experience life as a meaningful and positive process.
Patient Or Public Contribution:
This study received support from children with TCS and their guardians during data collection, as well as from the head nurse of the unit. Coresearchers also contributed to design, data collection, analysis and writing.
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